Medical Classification WHO ICD codes by Mary Schweitzer

Medical Classification WHO ICD codes by Mary Schweitzter

Post #105 Shortlink:

Mary Schweitzer

October 14, 2011

There has of late been speculation that it would be bad for U.S. patients if CFS and M.E. were placed in the same category in the neurology chapter of ICD-10-CM, the “clinical manual” of ICD-10 that will be adopted for use in the United States.

But the fact of the matter is that in ICD-10, CFS already IS coded to G93.3, “PVFS and M.E.” in the index, which is as authoritative as the tabular version. [PVFS stands for Post-Viral Fatigue Syndrome, and is not diagnosed very frequently any more – not at all in the U.S.]. It already IS coded in neurology.

110 nations use ICD-10 as-is, including the UK. Australia has a clinical version that does not alter the codes for M.E. or CFS. But Canada and Germany have clinical versions that place CFS in the tabular version of ICD-10, in G93.3 with M.E. In fact, it was the Canadian clinical version, ICD-10-CA, which led to the highly regarded Canadian Consensus Criteria for ME/CFS in 2003.

NOBODY EXCEPT THE UNITED STATES CODES CFS IN THE “R” CHAPTER. If we coded CFS at R53.82, which was the plan of NCHS, we would have been the ONLY nation in the world to do so.

Furthermore, M.E. is not a known diagnosis in the U.S. (WE know about it, but very few doctors do.) There is no definition for it approved by CDC. We can now point to the new definition that was published in the Journal of Internal Medicine, but that is more likely to enable researchers in the US and Canada to use M.E. if they want to, than to trickle down to U.S. clinicians [1]. Part of the problem is that when M.E. replaced atypical polio as a disease name in British commonwealth nations and Europe, in the U.S. the new name was epidemic neuromyesthenia, which has not (to my knowledge) been diagnosed in decades.

So if CFS gets coded as R53.82 in the U.S.’s ICD-10-CM, yes, M.E. will be less likely to confuse with CFS – but that would only be in the U.S., and in the U.S. we only get diagnosed with that revolting name CFS anyway. At least we could get them scratching their heads and asking, “What is M.E.?” if both diseases were placed together where those of you outside the U.S. already have it.

Given that U.S. doctors do not have a high opinion of CFS, keeping it under “R” in “vague signs and symptoms” would only reinforce their prejudice against it as a “garbage diagnosis” – something you diagnose when you run out of ideas.

Finally, there was an inadvertent error in an earlier Co-Cure message about getting CFS out of the “R” category. The “R” category is not for psychiatric diagnoses.

British psychiatrists use “fatigue syndrome,” which is coded at F48.0 under neuroses at “neurasthenia.”. Then when they write about it, they mix and match terms so it looks as if CFS is the same thing, and therefore it goes in F48.0. That is a serious problem in the UK. [I have to admit to being alarmed recently when a U.S. virologist connected CFS not to the history of atypical polio, which is pretty well established, but to the arcane nineteenth century diagnosis of neurasthenia. Please don’t do that!]

We are not (I hope) in current danger of being coded under neuroses at F48.0, neurasthenia, in the U.S. But the “R” diagnosis is sufficiently vague that it wouldn’t be difficult to use it to claim CFS patients really have CSSD (Complex Somatic Symptom Disorder), the category British psychiatrist and CBT advocate Michael Sharpe is trying to shoehorn into DSM-5, the new version of the American Psychiatric Association’s huge diagnostic tome. So it does leave us vulnerable [2].

To those outside the U.S. I would say, look to ICD-11. That’s what will affect you the most. To those in the U.S. (where we are finally getting around to adopting ICD-10-CM two decades after ICD-10 was written), what WE need is simply to get in step with the rest of the world now.

Mary M. Schweitzer PhD

Related material

[1] New International Consensus Criteria for M.E., Journal of Internal Medicine

Volume 270, Issue 4, pages 327–338, October 2011

Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C. P., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D. S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A. R., Marshall-Gradisbik, S., Mena, I., Mikovits, J. A., Miwa, K., Murovska, M., Pall, M. L. and Stevens, S. (2011), Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270: 327–338. doi: 10.1111/j.1365-2796.2011.02428.x


Full text in html

Full text in PDF

Or Open PDF here:  International ME Consensus Criteria

[2] DSM-5 Development: Somatic Symptom Disorders


Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary document (CFS coding)

Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary of Diagnosis Presentations September 14, 2011 (CFS Coding)

Post #104 Shortlink:

You can download an Audio of the September 14 NCHS meeting here:

[Note this is a large Zipped file.  The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]

Summary of Volumes 1 and 2, Diagnosis Presentations
September 14, 2011

Donna Pickett, co-chair of the committee, welcomed the members of the audience to the diagnosis portion of the meeting. She reviewed the timeline included at the beginning of the topic packet informing the attendees of the deadline for written comments on topics presented at this meeting. All diagnosis topics presented during the meeting are being considered for October 1, 2013 implementation.

Written comments must be received by NCHS staff by November 18, 2011. Ms. Pickett requested that comments be sent via electronic mail to the following email address since regular mail is often delayed. Contact information for all NCHS staff and the NCHS website are included in the topic packet. Attendees were also reminded that the full topic packet is currently posted on the NCHS website.


Page 2

Comments and discussion on the topics presented on September 14, 2011 were as follows:

Chronic Fatigue Syndrome

Mary Dimmock representing the Coalition 4 ME/CFS gave a presentation on the Coalition’s understanding of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) as well as their proposal. They presented additional options for coding of these two diagnoses. NCHS responded that since they were not aware of this additional option, until today’s meeting, the proposal would remain with the two options offered (one from NCHS and one from the requestor).

There were many comments from the audience including the following:

There was general support for NCHS proposed option 2, moving CFS to ICD-10-CM Chapter 6, Diseases of the Nervous System but retaining separate codes for CFS vs. ME. Reasons given for retaining separate codes included agreement that it is important to retain ability to do data extraction on the two conditions separately vs. combining them if desired. In addition, the CFS may not always be able to be identified as postviral.

Though the requestor had asked to have the term “benign” deleted from inclusion term “benign myalgic encephalomyelitis,” NCHS indicated it should remain somewhere at G93.3 to maintain compatibility with WHO ICD-10. Comments on this indicated that it should be added to proposed new code G93.31 with benign as a nonessential modifier.

[Ed: It was suggested at the meeting that the modifier “Benign” might appear in parentheses at the end of  “Myalgic encephalomyelitis”.]

It was recommended to change the excludes2 note, at proposed new code G93.32, to an exludes1 since it is not likely that one would have both chronic fatigue syndrome and a chronic fatigue, NOS from some other condition. There is no need to code chronic fatigue NOS separate from the CFS.

There was a general question asked about how this request can be considered for October 1, 2012 since it is not a new disease. There was also general support that if the change is approved to move CFS from Chapter 18, code R53.82, to a code within Chapter 6 it should occur in time for the October 1, 2013 implementation of ICD-10-CM.

There was general agreement, by those in the audience, that the term “myalgic encephalomyelitis” is not seen in medical records.

One commenter, representing Coalition4 ME/CFS indicated that ME and CFS should not be separated since it goes against the definition of the 2011 ME ICC (an international committee). Her opinion was that treatment is the same for both conditions, literature refers to ME and CFS together, and that the U.S. is behind the international recognition of these two conditions being the same.


The audience was asked to carefully review the proposals following the meeting and to submit written comments by the November 18, 2011 deadline.

[Extract ends]

Comments on proposals need to be submitted by November 18.

Comments from stakeholders, preferably via email, should be submitted to:

Donna Pickett RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics – CDC
3311Toledo Road Hyattsville, MD 20782
Via email:

Related material:

1] Full NCHS meeting Proposals document:

2] Full NCHS meeting Summary document:

3] Post: Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

4] Post: Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

Post #102 Shortlink:

Coalition4ME/CFS initiative



CFSAC discusses ICD-10-CM coding concerns

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services (DHHS) on issues related to chronic fatigue syndrome (CFS).

Go here for the current Roster of Voting and Ex Officio committee members.

CFSAC holds twice yearly public meetings and meeting Agendas, Minutes, Meeting Materials, Presentations, Public Testimonies, Meeting Videocasts and CFSAC’s Recommendations to the DHHS are published on the CFSAC website.

The National Center for Health Statistics (NCHS), the Federal agency responsible for use of the WHO’s International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10) in the United States, has developed a clinical modification of the classification for morbidity purposes. The ICD-10 is used to code and classify mortality data from death certificates, having replaced ICD-9 for this purpose as of January 1, 1999.

The WHO has authorized the development of an adaptation of ICD-10 for use in the United States for U.S. government purposes. Although a U.S. specific adaptation, with U.S. committees and technical advisory panels responsible for its development and oversight, all modifications to the ICD-10 must conform to WHO ICD conventions.

ICD-10-CM is planned as the replacement for ICD-9-CM, volumes 1 and 2.

U.S. lags behind

While much of the world has been using the ICD-10 for many years and is looking to move onto ICD-11 (currently  scheduled for implementation in 2015), the U.S. has been slow to make the transition from ICD-9-CM to a “clinical modification” of ICD-10.

ICD-10-CM development has been a long drawn out process and ICD-10-CM isn’t scheduled for implementation until October 1, 2013.

So when U.S. coders, clinicians, medical insurers and reimbursers are adapting to using ICD-10-CM, much of the rest of the world will be gearing up for ICD-11, which is planned to be a significantly different product to ICD-10, in terms of its structure, content, presentation, accessibility and its capacity, as an electronic publication, for continuous update and revision.


CFSAC new Recommendation to HHS

At the last CFSAC meeting (May 10-11, 2011), an hour long slot had been tabled on the agenda for Day One for discussion of concerns around the NCHS’s current proposals for the coding of CFS within ICD-10-CM.

The Committee was also informed of the considerable concerns for the implications for CFS and ME patients of the draft criteria and new categories being proposed by the DSM-5 “Somatic Symptom Disorders” work group.

A new CFSAC Recommendation to HHS was proposed by Committee member, Dr Lenny Jason, seconded by Dr Nancy Klimas, and voted unanimously in favour of by the Committee [1].

This new Recommendation, set out below, restates and expands on the Recommendation that CFSAC had made to HHS, in August 2005.

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS. CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)     Source: CFSAC Recommendations – May 10-11, 2011


What are the current proposals?

For ICD-10-CM, the current proposals for the classification of PVFS and ME are:

that Postviral fatigue syndrome would be classified within Chapter 6 Diseases of the nervous system under the parent class “G93 Other disorders of brain”, coded at G93.3.

(Benign) Myalgic encephalomyelitis would be classified as an Inclusion term under Title category “G93.3 Postviral fatigue syndrome”.

This is in keeping with the international ICD-10, from which ICD-10-CM has been developed. See Footnote [4] for link to page setting out current proposals for ICD-10-CM.

In ICD-10, Chronic fatigue syndrome is indexed to G93.3 in Volume 3 The Alphabetical Index. 

In ICD-10-CA, the Canadian Clinical Modification of ICD-10, Chronic fatigue syndrome is classified in the Tabular List in Chapter 6, under “G93.3 Postviral fatigue syndrome”.

For ICD-11, the proposal is that all three terms should be classified within Chapter 6.

But for ICD-10-CM, instead of coding Chronic fatigue syndrome to G93.3, the proposal is  to retain Chronic fatigue syndrome in the R codes chapter (which is Chapter 16 in ICD-9-CM and will be Chapter 18 in ICD-10-CM), where it would be coded thus:

Chapter 18  (Symptoms and signs and ill defined conditions)


R53.8 Other malaise and fatigue

R53 Malaise and fatigue

R53.82 Chronic fatigue, unspecified
              Chronic fatigue syndrome (NOS)

Excludes1: postviral fatigue syndrome (G93.3)

(In ICD, NOS stands for “Not Otherwise Specified”.)


What is NCHS’s rationale for retaining CFS as (CFS NOS) in the R code chapter?

According to the background document Dr Wanda Jones presented to the Committee:

As it relates to CFS the use of two codes is consistent with the classification as there would be a code to capture CFS when the physician has determined the cause as being due to a past viral infection (G93.3) or if the physician has not established a link with a past viral infection (R53.82).

If code R53.82 were eliminated it would not be possible to disaggregate cases that are now distinguishable through the use of two codes.

There is a general equivalence map between ICD-9-CM and ICD-10-CM codes, however, if a concept is not carried over from the earlier version to the newer version data will be lost going forward.

Source: Extract: ICD-related questions from CFSAC for May 2011 meeting

Dr. Jones clarified for the Committee that if, in the clinician’s judgment, it was considered there is enough evidence to attribute the patient’s illness to a viral illness onset then the clinician could code to G93.3 (Postviral fatigue syndrome). If “however they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes.” [1]
It has been further confirmed that testing for a viral illness is not required to assign a code – that coding is based on the clinician’s judgment.
And from the NCHS September 14 meeting Proposals document:
In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.

Is this a new proposal?

No. This is a long-standing proposal that had been known about since at least 2007. It has been discussed on forums and raised in mailings on the Co-Cure Listserv list in 2007 and 2008 by U.S. advocates Mary Schweitzer and Jean Harrison, and flagged up by others in the U.S. and elsewhere, in the last couple of years.

The proposed coding of CFS, PVFS and (B) ME in the forthcoming ICD-10-CM had already been discussed at public CFSAC meetings in June 2004, when the NCHS’s, Donna Pickett, had given a presentation and again in September 2004, January 2005 and May 2010.

So the proposed coding of PVFS, (B) ME and CFS for ICD-10-CM is by no means a new issue.

As noted, ICD-10-CM has been under development for many years. A public comment period ran from December 1997 through February 1998. In 2001, the proposal had been that all three terms should be coded to G93.3, in keeping with the placement in the WHO’s ICD-10 [2].

I am advised that at one point, all three terms: PVFS, (B) ME and CFS, were proposed to be coded under G93.3, with a “CFS NOS” retained in the R codes. But that subsequently, the placement of CFS in Chapter 6 under the G93 parent class was deleted, leaving “CFS NOS” orphaned, in Chapter 18.


What is the ICD “R code” chapter for?

There is a four page ICD-11 Discussion Document that is worth a read: Signs and Symptoms [Considerations for handling categories and concepts currently found in chapter 18 of ICD-10, “SYMPTOMS, SIGNS AND ABNORMAL CLINICAL AND
LABORATORY FINDINGS NOT ELSEWHERE CLASSIFIED”, (R-codes), authors: Aymé, Chalmers, Chute, Jakob.] Open here: Discussion: Signs and Symptoms (Chapter 18)

The R codes chapter is the ICD chapter for “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)”

“This chapter includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill defined conditions regarding which no diagnosis classifiable elsewhere is recorded.” Source: ICD-10-CM Chapter 18, 2011 release.


Dustbin Diagnosis

At the May CFSAC meeting, Committee member, Steven Krafchick, a medical and disability attorney, raised his considerable concerns for the legal and medical insurance ramifications of coding CFS under the “R codes” at the May CFSAC meeting [1]. 

Coding CFS under R53.82 for “non viral onset” cases will consign patients to a dustbin diagnosis that will continue to confuse and conflate Chronic fatigue syndrome with Chronic fatigue. There are no certainties that clinicians will code new cases using the unfamiliar G93.3 PVFS and ME codes or that existing CFS patients will get “upgraded” to G93.3 ME.

Coding CFS under R53.82 under ill defined conditions will make patients more vulnerable to the proposals of the APA’s DSM-5 “Somatic Symptom Disorders” Work Group.

Coding CFS under R53.82 will render ICD-10-CM out of line with at least four versions of ICD-10, including Canada’s ICD-10-CA, which has all three terms classified in the Tabular List under G93.3, and out of line with proposals for the forthcoming ICD-11, scheduled for implementation in 2015. The U.S. would be the only country with CFS coded in the R codes.




Have representations been made to the NCHS Committee?

Although representations around the coding of CFS for ICD-10-CM have been made to CDC over the years, no stakeholder representations at NCHS meetings are recorded.

At the May CFSAC meeting, Dr Jones informed the Committee that the ICD-CM process is a public process and that there is an opportunity to input into the update of ICD-9-CM and development of ICD-10-CM as part of that process, and to engage with the NCHS Committee via regularly scheduled public meetings. Dr Jones confirmed that NCHS has stated that there has been no public presence from the CFS community at these meetings.
It was established during the May meeting that the deadline for submitting representations for new inclusions or modifications to existing proposals for ICD-10-CM for tabling for discussion at the next NCHS Coordination and Maintenance Committee meeting would close on July 15, for a meeting scheduled for September 14. It was further noted this would be the last meeting before implementation of the partial code freeze and that this was therefore a time sensitive issue.
Committee members discussed the potential for a representative of CFSAC attending the September 14 ICD-9-CM Coordination and Maintenance Committee meeting if it were permissible for CFSAC to give public testimony to another advisory body; Dr Jones stated that she would check the rules. Medical attorney, Steven Krafchick, had been particularly keen to see this suggestion taken forward.


Coalition4ME/CFS initiative

In a Press Release dated September 12, 2011, the Coalition4ME/CFS, which comprises a number of US 501 (c)(3) registered ME and CFS organizations, announced that the Coalition had submitted a representation to NCHS in July.

The Coalition had set out its proposals and a rationale in a 48 page letter dated July 14 and had been successful in getting the issue of the proposed coding of CFS in ICD-10-CM placed on the agenda for the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee. 

Mary Dimmock and Marly Silverman attended the September meeting and presented the Coalition’s proposal and rationale to the NCHS. The NCHS presented an alternative suggestion to the current proposal for the coding of CFS in ICD-10-CM on which stakeholders may also wish to submit comment.

The Coalition4ME/CFS’s materials can be found here:

There are a quite a number of background documents on the Coalition’s site and you may want to start with the Coalition’s Summary and Overview document.

You’ll also find the Coalition’s Press Release, ICD FAQ, Coalition Proposal, ICD Presentation (PPT), ME-ICC Update, ICD Meeting Update, IACFS Conference info and an ICD Sample Letter (a template for submitting comment to NCHS in support of the Coalition’s proposals).


What is the Coalition4ME/CFS proposing?

The Coalition proposes that for ICD-10-CM, Chronic fatigue syndrome (currently coded as “Chronic fatigue syndrome NOS”) should be deleted from Chapter 18: R53.82 Malaise and fatigue and instead, classified within Chapter 6 Diseases of the nervous system under the parent class G93 Other diseases of brain, under the Title term G93.3 Postviral fatigue syndrome, under which code Benign myalgic encephalomyelitis is proposed to be classified.

 This would bring the US specific ICD-10-CM in line with international ICD-10 (in which CFS is indexed to G93.3) and ICD-10-CA (Canada), where all three terms are classsified within the ICD-10-CA Tabular List under G93.3.

This would reflect the CFSAC Committee’s Recommendation to HHS of May 2011 which had prompted the Coalition’s initiative.

This would bring ICD-10-CM in line with ICD-11, for which it is proposed that all three terms are classified in Chapter 6 Diseases of the nervous system.

I shall be setting out the various proposals in a forthcoming post.


September 14 Coordination and Maintenance Committee meeting

The CDC webpage for the development of ICD-10-CM is here:

The 2011 release for the draft ICD-10-CM is available from the page above under this section of the page. Note that although this release of ICD-10-CM is available for public viewing, the codes in ICD-10-CM are not currently valid for any purpose or use. The most recent update to the draft, the “2011 release of ICD-10-CM” replaces the December 2010 release.

The CDC webpage for the ICD-9-CM Coordination and Maintenance Committee remit, meeting schedules and meeting documentation is here:

The ICD-9-CM Coordination and Maintenance Committee is a Federal Committee; suggestions for new inclusions to ICD-9-CM and modifications to proposals for the forthcoming ICD-10-CM come from both the public and private sectors.  Interested parties and stakeholders are required to submit proposals for modification prior to a scheduled meeting.

These twice yearly meetings are held as public fora to discuss proposed modifications to ICD-9-CM and proposals for ICD-10-CM and a number of proposals and modifications around other diseases and disorders had been tabled for discussion on September 14, in addition to the issue of the coding of CFS in ICD-10-CM.

Meeting presentation

Mary Dimmock (who prepared the proposal) and Marly Silverman (PANDORA founder and Coalition4ME/CFS steering committee member) presented on behalf of the Coalition at the NCHS’s September 14 meeting.

At the meeting, the NCHS had presented an alternative suggestion to the current proposal for the coding of CFS in ICD-10-CM which suggested coding (B) ME and CFS under two separate sub codes (G93.31 and G93.32) under a revised G93.3 parent “G93.3 Postviral and other chronic fatigue syndromes” (a not entirely satisfactory suggestion that I shall set out in full in a forthcoming post). I shall be posting extracts from the two NCHS meeting Proposals and Summary documents where they relate to the issue of the coding of CFS in the next post, and you can download the entire documents from the links below.

You can download an Audio of the September 14 NCHS meeting here:

[Note this is a large Zipped file.  The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]

The NCHS Committee’s Summary of the proceedings of this meeting can be downloaded here: Summary September 14, 2011. See Page 2.

The CDC site says, “Note: This document was re-posted, changes are on page 2, bullet 2, bolded.  If you downloaded the previous document you will need to download this updated document.”

The NCHS Committee’s Proposals document is here:  Proposals September 14, 2011. See Pages 10-11.

The CDC site says, “Note: This document was re-posted, if you downloaded the previous document you will need to download this updated document.”


What’s the deadline for comments and where do I send them?

The closing date for submitting comments to NCHS on the proposals is Friday, November 18.

Comments from stakeholders, preferably via email, should be submitted to:

Donna Pickett RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics – CDC
3311Toledo Road Hyattsville, MD 20782
Via email:


Coming up…

In upcoming posts I’ll be setting out the various proposals and the NCHS’s suggestion, for ease of comparison, and a posting by Mary Schweitzer around ICD-10-CM.


Footnotes and related postings:

1] Minutes of May 10-11 2011 CFSAC meeting (Extract: Discussion of concerns re coding of CFS for ICD-10-CM)

2]  A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases CDC, 2001.

3] CFS orphaned in the “R” codes in US specific ICD-10-CM

4] Forthcoming US “Clinical Modification” ICD-10-CM (starts half way down page)

5] I have written to the CDC’s, Donna Pickett, to request that consideration is given to posting stand alone PDFs of the draft Tabular List and Index. (At the moment, these two documents require extraction or opening in situ from a 14 MB Zipped file which contains five PDFs, which include the ICD-10-CM Tabular List and the Alphabetical Index.)

To view or download the Tabular List and Alphabetical Index for the 2011 release of ICD-10-CM:

Go to:

Heading: ICD-10-CM Files – 2011 release

Click on: ICD-10-CM PDF Format for which the URL is

Open or save this directory file:

12/20/2010 08:40AM    14,131,267

contains 5 PDF files, which include the Tabular List (7.8 MB) and the Alphabetical Index (4.7 MB) which can be viewed in situ or saved to hard drive.

Live streaming of CFSAC Meeting (US) today, 10-11 May

Live streaming of CFSAC Meeting (US) today, 10-11 May

Post #76 Shortlink:

Chronic Fatigue Syndrome Advisory Committee (CFSAC)
May 10-11, 2011
Room 800, Hubert H. Humphrey Building
200 Independence Ave, S.W.
Washington, D.C. 20201

A reminder that Day One of the two day spring CFSAC meeting will be streaming live today.

A copy of the Meeting Agenda is published in this post:

CFSAC Spring 2011 Meeting Agenda (May 10-11):

Public and Written Testimonies can be read and downloaded from this page of the CFSAC website:

The meeting proceedings can be watched live at this page (Requires Windows Media Player version 9 or higher or Silverlight Player installed):

The archived videocasts have had simultaneous subtitles.

The meeting opens at 9.00am Washington D.C. time (which is around 5 hours time difference with UK).  So streaming should commence  about five minutes before 2.00pm UK time (usually the microphones are switched off until just before the meetings starts, so anticipate video only until the meeting is called to order).

ICD-10-CM proposed coding issue

I am very pleased that the issue of the proposed coding for CFS in the forthcoming ICD-10-CM (a US specific “Clinical Modification” of ICD-10 scheduled for implementation in October 2013 and subject to a partial code freeze, in October 2011) has been placed back on the agenda and that an hour’s time has been tabled for discussion of this important item.

Discussion of ICD-10-CM is tabled to start at 1.15pm Washington D.C. time (6.15pm UK time).

1:15 p.m. Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns     Committee Members

During the Public Testimony sessions, US patient and patient advocate, Mary Schweitzer, Ph.D., will be speaking about the CDC and also references the ICD-10-CM coding issue:


NCHS, within CDC, is overseeing the development of ICD-10-CM. We need to keep CFS in the same code as in ICD-10 – under neurology, at G93.3. That’s where it is in WHO’s index to ICD-10 – adopted by over one hundred nations. It’s also under G93.3 in the tabular versions of the clinical modifications produced by Canada, Germany, and Australia. It should not be placed in R53.82, under “vague signs and symptoms.” We would be the only nation to have CFS in R53.82. Why?

A one page handout outlining the ICD-10-CM coding issue is being circulated at the meeting and can be read here: CFSAC Handout ICD-10-CM 10 May 2011

Online Version of ICD-10 for 2011?

Online Version of ICD-10 for 2011?

Post #68 Shortlink:

The information in this mailing relates only to ICD-10, the current version of the WHO’s International Classification of Diseases in use in the UK and over 100 countries worldwide. It does not relate to the forthcoming international revision of ICD-10, which will be ICD-11.

Nor does it relate to the country specific Clinical Modifications of ICD: ICD-9-CM; the forthcoming ICD-10-CM: ICD-10-CA (Canada); ICD-10-GM (Germany); ICD-10-AM (Australia); ICD-10-TM (Thailand).

The ICD-10 Updating process

The International Conference for the Tenth Revision of the ICD held in Geneva in 1989 recommended that “…WHO should endorse the concept of an updating process between revisions and give consideration as to how an effective updating mechanism could be put in place”.

The three volumes of ICD-10 were published between 1992 and 1994 and came into use in WHO Member States from 1995.

Two separate bodies were established to manage the updating process: the Mortality Reference Group (MRG) and the Updating and Revision Committee (URC).

The concept for the MRG was developed in 1997, and it began making decisions regarding the application and interpretation of ICD for mortality in 1998. The MRG also makes recommendations on proposed ICD updates to the URC.

The URC was established in 2000 and receives proposals from the MRG and members through the WHO Collaborating Centres for the Family of International Classifications (WHO FIC). The URC considers the proposals and submits recommendations on proposed updates to the Heads of Collaborating Centres who, in turn, make recommendations to WHO.

Updates to the published volumes of ICD-10 are approved annually at the October meetings of Heads of WHO Collaborating Centres for the Family of International Classifications and are available as annual lists of changes. The lists indicate the source of recommendation and implementation date and they are published in PDF format (from 1996 to 2007) on this page:

According to this “List of Official ICD-10 Updates” page, all major changes that were scheduled for 2009 were postponed to 2010.

This PDF document:

or here:

is the Report of a WHO FIC Council conference which took place on 16 February 2011.

On Page 3 of this public domain document it records:

4. Ongoing business

“Posting of Updates for ICD-10: So far, the URC has submitted all relevant files to WHO. Following the WHO review, the updates will be published on WHO web site latest by 31 March 2011.

“Posting of Updates for ICF is scheduled before 31 March 2011.

“Online Version of ICD-10 for 2011: The meeting suggested that it is necessary to have an official reference for the extensive changes to ICD that occurred in 2010.

“The relevant files are available to WHO and such a version will be put online.”

[Note: The update files do not appear to have been uploaded to the ICD site yet.]

The above suggests that WHO envisages publishing an Online Version of ICD-10 for 2011 that would replace the current version for 2007, which can be accessed here:

Note this would not be the replacement for ICD-10, but an online version of the Tabular List that incorporates the annual updates to ICD-10. ICD-11 is not scheduled for implementation until 2014/15 and is still at the Alpha drafting stage.

There is no evidence to suggest any changes within ICD-10 to the current classifications, codings and indexing for PVFS, (B)ME and Chronic fatigue syndrome and according to the ICD-11 iCAT drafting platform, proposals for ICD-11 are that all three terms should be classified within ICD-11 Chapter 6: Diseases of the nervous system.

However, I do want to alert patients, advocates and those who maintain websites that according to this recent WHO FIC document, there is a possibility that the ICD 10th Revision, Version for 2007 may be replaced, this year, by a version for 2011 that incorporates the annual updates.

I will provide more information if and when an online version for 2011 is published.


1] International Classification of Diseases (ICD)

2] ICD Classifications updating process

3] List of Official ICD-10 Updates

4] International Statistical Classification of Diseases and Related Health Problems 10th Revision Version for 2007 (the current version)

Next meeting of Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US)

Next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US)

Post #66 Shortlink:

The next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) takes place on Tuesday and Wednesday, 10 and 11 May 2011. A copy of the Agenda for this meeting will be posted as soon as it becomes available.

“Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.”

Chronic Fatigue Syndrome Advisory Committee (CFSAC)

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

factors affecting access and care for persons with CFS;

the science and definition of CFS; and

broader public health, clinical, research and educational issues related to CFS.

Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Wanda K. Jones, Principal Deputy Assistant Secretary for Health in OASH, will continue in her role as the Designated Federal Officer for CFSAC.

CFSAC Notices

CFSAC Roster

CFSAC Meetings

Agenda; Minutes; Presentations; Recommendations

Recommendations to the Secretary of Health and Human Services


May 10-11, 2011 CFSAC Meeting



[Federal Register: March 22, 2011 (Volume 76, Number 55)]
[Page 15982]
From the Federal Register Online via GPO Access []


Meeting of the Chronic Fatigue Syndrome Advisory Committee

AGENCY: Department of Health and Human Services, Office of the Secretary, Office of the Assistant Secretary for Health.

ACTION: Notice.

SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

DATES: The meeting will be held on Tuesday and Wednesday, May 10 and 11, 2011. The meeting will be held from 9 a.m. until 5 p.m. on May 10, 2011, and 9 a.m. until 4:30 p.m. on May 11, 2011.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201. For a map and directions to the Hubert H. Humphrey building, please visit .

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, DrPH; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201. Please direct all inquiries to .

SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) the current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve the quality of life of CFS patients.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, when it is finalized. The meeting will be broadcast over the Internet as a real-time streaming video. It also will be recorded and archived for on demand viewing through the CFSAC Web site.

[Ed: the real-time streaming also has real-time auto transcription.]

Public attendance at the meeting is limited to space available.

Individuals must provide a government-issued photo ID for entry into the building where the meeting is scheduled to be held. Those attending the meeting will need to sign-in prior to entering the meeting room.

Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at in advance.

Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.

Individuals who wish to address the Committee during the public comment session must pre-register by Monday, April 18, 2011, via e-mail to . Time slots for public comment will be available on a first-come, first- served basis and will be limited to five minutes per speaker; no exceptions will be made. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.govprior to the close of business on Monday, April 18, 2011.

If you do not submit your written testimony by the close of business Monday, April 18, 2011, you may bring a copy to the meeting and present it to a CFSAC Support Team staff member. Your testimony will be included in a notebook available for viewing by the public on a table at the back of the meeting room.

Members of the public not providing public comment at the meeting who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Executive Secretary, at prior to close of business on Monday, April 18, 2011. Submissions are limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team upon submission of your materials to

All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC Web site and made available for public inspection. Testimony and materials submitted should not include any sensitive personal information, such as a person’s social security number; date of birth; driver’s license number, State identification number or foreign country equivalent; passport number; financial account number; or credit or debit card number. Sensitive health information, such as medical records or other individually identifiable health information, or any non-public corporate or trade association information, such as trade secrets or other proprietary information also should be excluded from any materials submitted.

Dated: March 18, 2011.
Wanda K. Jones,
Executive Secretary, Chronic Fatigue Syndrome Advisory Committee.
[FR Doc. 2011-6702 Filed 3-21-11; 8:45 am]

Previous two meetings:

May 10, 2010 Meeting





Videocast    [RealPlayer is required to view]

CFSAC Recommendations – May 10, 2010

The Secretary should ask the blood community to defer indefinitely from donating any blood components, any person with a history of chronic fatigue syndrome.

The Secretary should recognize the special challenges of ensuring that CFS is part of any efforts to train or educate health care providers under health reform.

The Secretary should direct CMS, AHRQ, and HRSA to collaborate on developing a demonstration project focused on better value and more efficient and effective care for persons with CFS. This can be a public-private effort, and monitoring outcomes and costs should be part of the overall evaluation.

The Secretary should ask the Designated Federal Officer to explore adding a web-based meeting to conduct CFSAC business.

CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the “Signs and Symptoms” chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).*

*DFO Note: The ICD 10-CM is scheduled for implementation on October 1, 2013. In that classification, two mutually exclusive codes exist for chronic fatigue [sic]:

post-viral fatigue syndrome (in the nervous system chapter), and
chronic fatigue syndrome, unspecified (in the signs and symptoms chapter).

HHS has no plans at this time to change this classification in the ICD 10-CM.

October 12, 2010 Science Day
October 13-14, 2010





Videocast     [RealPlayer is required to view]

CFSAC Recommendations – October 13-14, 2010

The specific recommendations articulated by the Committee are:

Develop a national research and clinical network for ME/CFS (myalgic encephalomyelitis/CFS) using regional hubs to link multidisciplinary resources in expert patient care, disability assessment, educational initiatives, research and clinical trials. The network would be a resource for experts for health care policy related to ME/CFS.

Engage the expertise of CFSAC as HHS moves forward to advance policy and agency responses to the health crisis that is ME/CFS.

Adopt the term “ME/CFS” across HHS programs.

Memo from Secretary Sebelius to Christopher Snell, CFSAC Chair, on the October 2010 Meeting

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